I feel the need to shower. It’s time to come clean. Not in a drench me with lukewarm water in an enclosed box kind of thing. I think this is more a metaphoric shower. In my posts talking about my autoimmune disease Sarcoidosis, I’ve always disguised my doctors’ names. It’s time to come clean.
I realized that those folks who do read my posts about Sarcoidosis may be looking for doctors to be their advocates. I know that the process of diagnosis, and just having this disease is emotionally draining. Not knowing where to start, or what doctors to turn to, or ones that even know what the disease is … that’s the hardest part. Not knowing. Feeling alone. Feeling helpless & hopeless.
I guess if I go back an list the characters in this long running play “Living The Sarcoid Life” I could clear things up. Maybe a list of the ‘advocates’ and the ‘clueless’ might work. But then I also need to think of the liability of talking about the ‘clueless’ … can they sue me for libel? It is only my opinion. For now … just the advocates.
- Dr Mike = Dr Michael Rosenfield
- Dr Rosenfield of Emerald City Medical Arts was the man who started it all. He was the one I found to replace a primary care doctor, that didn’t really care. After the lumps on my forehead were biopsied, and one of the soft diagnoses was sarcoid, Dr Rosenfield immediately sent me for a lung x-ray. When that came back with ‘shadowing’ on my lungs, he sent me for a CT scan. Within days he did more for me that a host of others did in months. He is certainly an advocate, and always will be.
- Dr K = Dr Lincoln Kamel
- Dr Kamel of the Eastlake Chiropractic Center has been my chiropractor since I moved to Seattle. I have to give him his props. He’s an ‘old school’ chiropractor. He does straight up manipulation. Mind you, it’s not the only thing. But he’s good, kind, and thorough. He is a healer. He was certainly an advocate for me during the whole Sarcoid diagnostic and treatment process. During this mess, my neck and shoulders felt like they were in knots. Twist twist, snap snap, pull pull … pop! Ah … that feels better. Thanks Dr K!
- Dr Spaghetti-Sauce = Dr Ganesh Raghu
- Ganesh Raghu M.D., FACP, FCCP is a professor of medicine & laboratory medicine, pulmonary and critical care medicine, as well as director of Interstitial Lung Disease, Sarcoid, Pulmonary Fibrosis Program Medical Director, Lung Transplant Program at the University of Washington Medical Center (UW Med). Now that’s a mouthful! :) Dr Raghu is one of the most down to earth, no-nonsense, tell-it-like-it-is doctors I have ever had, or could ever hope to have. I literally found him by doing a Google search on Sarcoid and Seattle. He was the replacement for another pulmonologist I had tried, but who was from the ‘patient doesn’t know anything … and damned if he’s going to listen to you’ school of backwards medicine. Though he was the one who did my initial bronchoscopy. But after that … Dr Raghu was my main man and Sarcoid specialist. Another advocate ‘for life’!
With that out of the way … it’s time for 11 o’clock update:
In the past month I’ve been in and out of doctors offices. Went to see Dr Raghu and Dr Bakewell (my new Rhumotologist) on December 17th (08) to follow up after having been taking the chemotherapy drug Methotrexate and steroid Prednisone for the past three months. The drugs were used to see if they could slow down the growth of the cystic lesions in the bones of my hands, and the associated swelling and pain. But three weeks earlier I had to stop the drugs because I was getting horrible headaches that sometimes lasted for two days. They would hurt so badly, the headaches made my teeth hurt too. Ouch ouch ouch father-fucker! My vision was also getting much blurrier, which can also be a side effect of Methotrexate. The other reason to see them was to do my yearly pulmonary function test.
Long story short. My lung capacity is now down 10% from where it was just eleven months before and my hemoglobin was up. Fuck! Fuck! Fuck! Dr Raghu also sent me for an MRI of both my hands to see if the lesions had shrunk, or new ones started. He also sent me for a sleep test. He thought that my headaches and hemoglobin rise could be caused by sleep apnea. The words I did not want to hear, were spoken by Dr Raghu. “Your Sarcoid is active”. Grrrrrrrrrrrrrr.
MRI = nothing has changed. So. Did the lesions not change becuase of the Methotreaxate & Prednisone or did they not change, because they did not change. I always have to pose these questions. And the doctors will say … don’t know. Hmmm.
Sleep Test = Inconclusive. I will have to wait two weeks for the result. I only took the test Monday (1/5/09). But the technition Surinder, said from what he could see the results were inconclusive and may have to repeat the study. Happy happy! Joy joy!
BTW … the photo above was taken by Surinder on my iPhone. He himself is a photographer too … so I asked him to take the photo. And Tyra Banks would be so proud of me … I was “looking for the light”. Only problem is … could any photo be more unflattering. The wonders of modern drugs (Prednisone) … well that’s my story … and I’m sticking to it!
Fuck! I’ve misplaced my gun! What’s an aging overweight Sarcoid patient to do! ;)